Suncoast Hospice Advocate

Monday, August 23, 2010

Does Hospice and Palliative Care Shorten a Patient's Life ?

Not long ago I saw an actively dying patient who was in severe pain. His wife was by his side, very distressed herself from watching her husband suffer through the last hours of his life. Their physician was reluctant to prescribe any additional pain medication, out of fear of suppressing his respiration and shortening his life. He reluctantly agreed to let me see the patient with a comment that a hospice referral always meant that the patient would soon die. He was right in this case. I aggressively treated the patient's pain who died 12 hours later. I suspect that this physician will always believe that the treatment of the patient's pain shortened his life. I am not so sure.

Hospice and palliative care providers are often accused of shortening a patient's life through aggressive use of pain and other symptomatic medications (as well as withdrawing life "supportive" interventions). So the paper published this past week in the New England Journal of Medicine provides additional evidence that our approaches to care not only enhance a patient's quality of life but, in some cases, may actually prolong that life as well. A study of 151 patients with newly diagnosed metastatic, non-small-cell lung cancer were randomized to receive usual oncology treatment alone, or with ongoing palliative care. As compared with the usual group, those receiving palliative care had better quality of life, less depression and survived nearly 3 months longer! Two other studies in the past few years have also demonstrated a survival benefit when palliative care is offered together with usual oncology or medical care (Kelley and Meier) .

I am not surprised that relieving distressing symptoms, reducing psycho-social concerns, diminishing suffering and avoiding acute care interventions when possible results in more patients with advanced disease living longer. More detailed work needs to done to determine which aspects of palliative care are most important in achieving various outcomes, but there is growing evidence that offering palliative care earlier in the disease process results in substantial benefits for our patients, as well as savings for the health care system (Morrison et. al. see CAPC site). The studies can help providers and families make difficult choices without the additional burden of believing that the patient's life may be shortened by the choice for hospice and palliative care .

Friday, April 30, 2010

Medicaid and Hospice

The 2010 Florida Legislative session is just about over and once again the hospice Medicaid benefit has survived intact. Many other programs within Medicaid did not fare as well, and the dire fiscal conditions of the state will likely mean more cuts in the future. Hospice programs serve about 7000 Medicaid residents each year in Florida (about 5% of the total hospice population). Although this is a relatively small population for us, the patients and families served are central to our mission as hospice providers. Medicaid hospice patients tend to be younger than other hospice patients, more likely to live in the community and more likely to have cancer diagnoses (and more severe pain syndromes). Medicaid patients with advanced illness often have less access to sub-specialty or care coordination. Eliminating the hospice benefit would add greatly to their risks and increase suffering in an already vulnerable population. A study describing the need for Florida's Medicaid hospice benefit was published a last year.

The hospice benefit in Medicaid is optional, no state is required to offer it. Yet 48 states do offer the benefit and although several have considered eliminating it, none have done so thus far (see an editorial published last year in the St Pete Times) . When state decision-makers are informed about the needs of this population and the financial consequences of eliminating the benefit (patients are more likely to wind up in hospitals and ICUs) they have all opted to keep the program intact.

Our advocacy efforts have informed and influenced lawmakers. Our combined efforts have been succesful, but we will likely have to make our case again next year. Stay tuned.

Monday, March 22, 2010

Health Care Reform

Late Sunday night, the House of Representatives passed H.R. 3590, The Patient Protection and Affordable Act and a companion bill that will soon be passed by the Senate on a simple majority vote. This will be the basis of health care reform. This is an enormously complicated bill, and will present both major challenges and major opportunities for our entire health care system, including our hospice community. More than 32 million people (2.7 million Floridians) will receive insurance coverage because of the bill. The President will sign the bill today.

The provisions of most importance to us in Hospice are payment reforms and updates in payment rates that will be pose major challenges in the future. It is important to realize however, that these changes will not take place for several years, and there will be many opportunities to try to lesson their impact. The wage index changes will still be phased in over the next many years as well. See NHPCO's summary of some of the provisions that will most directly affect us .

On the upside, there will be opportunities to provide hospice care alongside curative care in Medicare demonstrations and as a permanent component of care for terminally ill children in Medicaid. There will be funding to improve research and education in pain management and improvement in quality reporting. There will be many efforts directed at improving the coordination of care and transitions across health care settings which are so important to our patients and their families.

At Suncoast, we will continue to advocate to prevent the rate cuts from taking place. Many states , Florida included, intend to challenge some aspects of the law in the courts. The fights will continue and we will all be asked to do our part to advocate for hospice. The next few months and years will be both very challenging and very exciting with many chances to remake our very flawed health care system.

Friday, March 12, 2010

The Clinical Course of Advanced Dementia

As Hospice providers serving one of the oldest counties in America we care for many patients with advanced dementia. Determining that a patient has a life expectancy of 6 months or less if his/her disease runs its usual course is often difficult. The local coverage determinations (LCDs) that we use to establish eligibility for hospice care are helpful, but the course of illness in an individual patient can vary greatly from any "usual" one described by the guidelines.

A study published in the New England Journal of Medicine (Mitchell et al. 2009 ) followed over 200 patients with advanced dementia in 22 nursing homes to determine their clinical course. The patients had severe functional dependency and 55% died within the 18 months of the study. About half of the patients experienced some complication (pneumonia, fever, dysphagia). These complications were related to a dramatic (about 30%) increase in mortality. Dyspnea, pain, aspiration and agitation were the most common symptoms experienced. 17% went to the hospitals and 22% were referred to hospice during the course of the study. 96% of proxy decision makers thought comfort was the goal for care and only about 18% of them received information about the prognosis of the patient from their doctors.

This is an important study for hospice providers. Mortality rate in advanced dementia is very high as are the rates of complications and distressing symptoms. The presence of complications is associated with a much worse prognosis and families should be informed about this. Hospice care in the nursing home has been demonstrated (in other studies) to improve quality of care, family satisfaction and to decrease hospitalization rates. We make a huge difference in the lives of these very vulnerable patients.

Monday, March 1, 2010

Aging Services Network

This coming year, the first of the baby boomers (that massive post-War World II generation) will turn 65. As they have done with all other milestones, the "boomers" will likely transform the way aging is perceived, and how health and aging services will be delivered. Hospice and palliative care services will be essential to meet the needs of this population.

This past week I attended a forum in Washington to kick off the re-authorization of "The Older Americans Act of 1965". The Act established the Federal Administration on Aging as well as State and Area Agencies on Aging (all together these agencies are referred to as "The Aging Network"). Among its many provisions, the Act supports nutritional services (congregate and meals on wheels programs), nursing home ombudsman programs, home health aides and legal services for vulnerable elders. The Aging network leverages funds from Medicaid and Medicare as well as other government programs to expand the range of services it provides. As the Act is re-authorized, there is an opportunity for us to influence the future direction of the network to include a greater focus on hospice and palliative care.

Our older population is both growing and changing. Most elders in our community will want alternatives to nursing home placement. Many will want help coordinating care for advanced chronic illnesses in ways consistent with our philosophy. Support for care-givers and elder justice programs will become far greater concerns for policy makers as well. These are community needs that the network will need to address.

Hospice and palliative care has much to contribute to the network of aging services. As the time for re-authorization draws near, we will be sponsoring community discussions and advocating for support for our services in both Washington and Tallahassee. So stay tuned for notices about these events, and the opportunity to advocate for hospice in re-authorization.

~ HT

Other links:
Florida Department of Elder Affairs
West Central Florida Area Agency on Aging
AARP: Information about the Older Americans Act

Thursday, February 18, 2010

Feeding Tubes in Advanced Dementia

The use of feeding tubes in advanced dementia patients often present difficult emotional, clinical and ethical issues. Family and staff from hospitals, nursing homes and hospices may have very different views on the benefits and burdens of feeding tubes. Several older studies have shown that the use of tubes in these patients does not enhance survival, wound healing or aspiration risk. Two new articles shed some light on the great variation in the use of feeding tubes in different hospitals and nursing homes.

Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment
In this first article , Joan Teno et al. studied over 250,000 nursing home patients with advanced dementia who had been admitted to hospitals. About 20,000 tubes were placed over the 6 years of study but the rates of placement varied dramatically in different hospitals (from 0 tubes to 39 tubes per 100 patients in others). Larger , for-profit hospitals were more likely to have higher tube placement rates. Patients with DNR orders and advanced directives were less likely to get tubes. Once corrected for other factors, being a hospice patient did not seem to influence the tube decision!

The Influence of Nursing Home Culture on the Use of Feeding Tubes
The next study compared two nursing home with different rates of feeding tube use. The "culture" of the nursing home mattered a great deal in whether tubes were used. The researchers observed residents during mealtimes and concluded that the low use nursing home had higher staff ratios, more training, multi-disciplinary teams assisting families in decision-making and an attitude that residents generally are better off without tubes.

So it seems that the use of feeding tubes in advanced dementia patients may depend more on the hospitals and the nursing homes where patients reside than of the characteristics and wishes of the patients and families themselves. We can do allot to make sure that patient and families are fully aware of the benefits and burdens of tube feeding in dementia patients. They will then be in the best position to make decisions for themselves.

Wednesday, February 17, 2010

The Florida Hospice Model and For-Profit Providers

Hospice care in Florida is unique. Our model of care, provided mostly by large community integrated and not-for-profit hospices emerged out of a strong state regulatory structure (the Certificate of Need (CON) process) and a prohibition against new, for-profit providers (7 programs had operated prior to 1978 and were "grandfathered" in). In 2006, the Florida legislature authorized for-profit hospice entities to operate programs in the state but still required them to meet the CON provisions. Since that time, 6 new for-profit programs began operations in Florida.

A new report from the Office of Program Policy Analysis & Government Accountability OPPAGA) http://www.oppaga.state.fl.us/MonitorDocs/Reports/pdf/1009rpt.pdf issued in January compares for-profit and not-for profit hospices on the basis of three quality measures: pain control within 4 days of admission, patient and family assessment of whether the "right" amount of pain medication was given and whether they would recommend hospice services to others. More than 90% of hospices reported meeting the standards set for these quality measures. The results of the study were so positive that it was impossible to distinguish between provider types. So, the question of whether for-profit hospices offer the same high quality hospice care as the not-for-profits has not been answered yet. This is most likely because the three measures reported were not comprehensive enough to detect the differences.

The ability to measure and provide quality health care is becoming a critical concern for all of us. Medicare is increasingly focused on reporting of quality measures as well as developing a payment system based on quality outcomes. Poor care will be reimbursed less, or not at all. One of our goals will be to demonstrate that the Florida model of hospice care has the potential to improve care and influence our entire community. The spectrum of services, information resources, training opportunities, support groups for caregivers and uncompensated care (among many other services) that we provide are central parts of our model. They are rarely offered by for-profit hospice programs. As we move forward with reporting of quality measures to the state we will also offer these "community outcomes" as additional evidence of the value of our model of hospice care.